Asked by: Caroline Johnson (Conservative - Sleaford and North Hykeham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, for what reason some people with motor neurone disease are receiving tofersen during its evaluation by the National Institute for Health and Care Excellence; and if he will take steps to make it available to all patients who would benefit from it.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing authoritative, evidence-based recommendations for the National Health Service on whether new medicines represent a clinically and cost-effective use of resources. The NHS in England is legally required to fund medicines recommended by NICE, normally within three months of the publication of final guidance.
NICE has selected tofersen for treating amyotrophic lateral sclerosis caused by the superoxide dismutase – 1 (SOD1) gene mutations as a topic for guidance development through its Highly Specialised Technology (HST) programme. The HST programme appraises medicines for the treatment of very rare, and often very severe diseases, and evaluates whether they can be considered a clinically and cost-effective use of NHS resources. NICE has not yet been able to start the evaluation of tofersen as it is unable to issue guidance on the use of the technology without receiving an evidence submission about the technology’s clinical and cost-effectiveness from the marketing authorisation holder. Therefore, NICE is ready to review tofersen via its HST programme, as soon as Biogen indicates that it is ready to start the NICE evaluation.
I am aware that the marketing authorisation holder has established early access programmes (EAPs) through which some patients are currently accessing tofersen. Participation in company-led schemes is decided at an individual NHS trust level and under these programmes, the cost of the drug is free to both patients taking part in it, and to the NHS, but NHS trusts must still cover the administration costs and must provide clinical resources to deliver the EAP. No assessment has been made of regional variation in access to tofersen through the programme.
NHS England has published guidance for integrated care systems (ICS) on free of charge medicines schemes, providing advice on potential financial, resourcing, and clinical risks. ICSs should use the guidance to help determine whether to implement any of these schemes, including assessing suitability and any risks in the short, medium, and long term. The guidance is available at the following link:
Asked by: Caroline Johnson (Conservative - Sleaford and North Hykeham)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that all individuals with superoxide dismutase-1 motor neuron disease have access to early access programmes for motor neurone disease.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing authoritative, evidence-based recommendations for the National Health Service on whether new medicines represent a clinically and cost-effective use of resources. The NHS in England is legally required to fund medicines recommended by NICE, normally within three months of the publication of final guidance.
NICE has selected tofersen for treating amyotrophic lateral sclerosis caused by the superoxide dismutase – 1 (SOD1) gene mutations as a topic for guidance development through its Highly Specialised Technology (HST) programme. The HST programme appraises medicines for the treatment of very rare, and often very severe diseases, and evaluates whether they can be considered a clinically and cost-effective use of NHS resources. NICE has not yet been able to start the evaluation of tofersen as it is unable to issue guidance on the use of the technology without receiving an evidence submission about the technology’s clinical and cost-effectiveness from the marketing authorisation holder. Therefore, NICE is ready to review tofersen via its HST programme, as soon as Biogen indicates that it is ready to start the NICE evaluation.
I am aware that the marketing authorisation holder has established early access programmes (EAPs) through which some patients are currently accessing tofersen. Participation in company-led schemes is decided at an individual NHS trust level and under these programmes, the cost of the drug is free to both patients taking part in it, and to the NHS, but NHS trusts must still cover the administration costs and must provide clinical resources to deliver the EAP. No assessment has been made of regional variation in access to tofersen through the programme.
NHS England has published guidance for integrated care systems (ICS) on free of charge medicines schemes, providing advice on potential financial, resourcing, and clinical risks. ICSs should use the guidance to help determine whether to implement any of these schemes, including assessing suitability and any risks in the short, medium, and long term. The guidance is available at the following link:
Asked by: Cameron Thomas (Liberal Democrat - Tewkesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure equality of access to tofersen by people diagnosed with SOD1 motor neurone disease across England.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing authoritative, evidence-based recommendations for the National Health Service on whether new medicines represent a clinically and cost-effective use of resources. The NHS in England is legally required to fund medicines recommended by NICE, normally within three months of the publication of final guidance.
NICE has selected tofersen for treating amyotrophic lateral sclerosis caused by the superoxide dismutase – 1 (SOD1) gene mutations as a topic for guidance development through its Highly Specialised Technology (HST) programme. The HST programme appraises medicines for the treatment of very rare, and often very severe diseases, and evaluates whether they can be considered a clinically and cost-effective use of NHS resources. NICE has not yet been able to start the evaluation of tofersen as it is unable to issue guidance on the use of the technology without receiving an evidence submission about the technology’s clinical and cost-effectiveness from the marketing authorisation holder. Therefore, NICE is ready to review tofersen via its HST programme, as soon as Biogen indicates that it is ready to start the NICE evaluation.
I am aware that the marketing authorisation holder has established early access programmes (EAPs) through which some patients are currently accessing tofersen. Participation in company-led schemes is decided at an individual NHS trust level and under these programmes, the cost of the drug is free to both patients taking part in it, and to the NHS, but NHS trusts must still cover the administration costs and must provide clinical resources to deliver the EAP. No assessment has been made of regional variation in access to tofersen through the programme.
NHS England has published guidance for integrated care systems (ICS) on free of charge medicines schemes, providing advice on potential financial, resourcing, and clinical risks. ICSs should use the guidance to help determine whether to implement any of these schemes, including assessing suitability and any risks in the short, medium, and long term. The guidance is available at the following link:
Asked by: Stuart Andrew (Conservative - Daventry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department has made an assessment of regional variations in patient access to Tofersen.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing authoritative, evidence-based recommendations for the National Health Service on whether new medicines represent a clinically and cost-effective use of resources. The NHS in England is legally required to fund medicines recommended by NICE, normally within three months of the publication of final guidance.
NICE has selected tofersen for treating amyotrophic lateral sclerosis caused by the superoxide dismutase – 1 (SOD1) gene mutations as a topic for guidance development through its Highly Specialised Technology (HST) programme. The HST programme appraises medicines for the treatment of very rare, and often very severe diseases, and evaluates whether they can be considered a clinically and cost-effective use of NHS resources. NICE has not yet been able to start the evaluation of tofersen as it is unable to issue guidance on the use of the technology without receiving an evidence submission about the technology’s clinical and cost-effectiveness from the marketing authorisation holder. Therefore, NICE is ready to review tofersen via its HST programme, as soon as Biogen indicates that it is ready to start the NICE evaluation.
I am aware that the marketing authorisation holder has established early access programmes (EAPs) through which some patients are currently accessing tofersen. Participation in company-led schemes is decided at an individual NHS trust level and under these programmes, the cost of the drug is free to both patients taking part in it, and to the NHS, but NHS trusts must still cover the administration costs and must provide clinical resources to deliver the EAP. No assessment has been made of regional variation in access to tofersen through the programme.
NHS England has published guidance for integrated care systems (ICS) on free of charge medicines schemes, providing advice on potential financial, resourcing, and clinical risks. ICSs should use the guidance to help determine whether to implement any of these schemes, including assessing suitability and any risks in the short, medium, and long term. The guidance is available at the following link:
Asked by: Stuart Andrew (Conservative - Daventry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure equitable access to Tofersen for motor neurone disease patients.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing authoritative, evidence-based recommendations for the National Health Service on whether new medicines represent a clinically and cost-effective use of resources. The NHS in England is legally required to fund medicines recommended by NICE, normally within three months of the publication of final guidance.
NICE has selected tofersen for treating amyotrophic lateral sclerosis caused by the superoxide dismutase – 1 (SOD1) gene mutations as a topic for guidance development through its Highly Specialised Technology (HST) programme. The HST programme appraises medicines for the treatment of very rare, and often very severe diseases, and evaluates whether they can be considered a clinically and cost-effective use of NHS resources. NICE has not yet been able to start the evaluation of tofersen as it is unable to issue guidance on the use of the technology without receiving an evidence submission about the technology’s clinical and cost-effectiveness from the marketing authorisation holder. Therefore, NICE is ready to review tofersen via its HST programme, as soon as Biogen indicates that it is ready to start the NICE evaluation.
I am aware that the marketing authorisation holder has established early access programmes (EAPs) through which some patients are currently accessing tofersen. Participation in company-led schemes is decided at an individual NHS trust level and under these programmes, the cost of the drug is free to both patients taking part in it, and to the NHS, but NHS trusts must still cover the administration costs and must provide clinical resources to deliver the EAP. No assessment has been made of regional variation in access to tofersen through the programme.
NHS England has published guidance for integrated care systems (ICS) on free of charge medicines schemes, providing advice on potential financial, resourcing, and clinical risks. ICSs should use the guidance to help determine whether to implement any of these schemes, including assessing suitability and any risks in the short, medium, and long term. The guidance is available at the following link:
Asked by: Caroline Dinenage (Conservative - Gosport)
Question to the Department for Science, Innovation & Technology:
To ask the Secretary of State for Science, Innovation and Technology, what assessment she has made of (a) the adequacy of the level of pricing transparency of fixed term mobile and broadband contracts; and (b) the impact of this on people (i) experiencing financial difficulty and (ii) with mental health conditions when they enter the negotiation process at the end of those fixed term contracts.
Answered by Kanishka Narayan - Parliamentary Under Secretary of State (Department for Science, Innovation and Technology)
Affordability and transparency of telecoms services is important for Government and something we are keeping an eye on. The department monitors the market and consults stakeholders who conduct relevant research, including Ofcom, the independent regulator of telecommunications, and Citizens Advice.
In 2022, Ofcom introduced a requirement for providers to give new customers a one-page summary of their contract before signing, clarifying terms and price changes.
Operators are required under Ofcom’s General Conditions (C5) to follow guidelines on treating vulnerable consumers fairly, including for those facing financial or mental health challenges.
Asked by: Andrew Snowden (Conservative - Fylde)
Question to the Ministry of Justice:
To ask the Secretary of State for Justice, pursuant to the Answer of 22 September 2025 to Question 73115 on HM Courts and Tribunals Service: Data Protection, whether (a) financial penalties and (b) contract management actions were taken against any delivery partner.
Answered by Sarah Sackman - Minister of State (Ministry of Justice)
We have no central record of any financial penalties against any supplier/delivery partner in relation to this issue.
Contract management actions are undertaken as standard; HMCTS and the Ministry of Justice engage suppliers via frameworks managed by the Crown Commercial Service and did so over the course of the HMCTS Reform Programme (for example on the Digital Outcome and Specialists and G Cloud frameworks). These frameworks are designed to enable Government Departments to procure digital and technology services in a compliant, flexible, and value-for-money manner. Both frameworks operate under pre-approved terms and conditions that set clear expectations for supplier performance, financial management, and contract governance, providing Departments with consistent mechanisms to manage delivery risk and ensure accountability across multiple suppliers.
Asked by: Damian Hinds (Conservative - East Hampshire)
Question to the Department for Digital, Culture, Media & Sport:
To ask the Secretary of State for Culture, Media and Sport, pursuant to the Answer of 21 October 2025 to Question 78098 on Centre for Data Ethics and Innovation and Responsible Technology Adoption Unit, how many full time equivalent staff there were in the Centre for Data Ethics and Innovation by grade at the end of the 2022-23 financial year.
Answered by Ian Murray - Minister of State (Department for Science, Innovation and Technology)
The Full Time Equivalent Staff for the Centre for Data Ethics and Innovation by Grade at the end of the 2022-23 Financial year is shown below.
Grade | FTE Total |
A | 13 |
A(U) | * |
B | 9 |
C | * |
Senior Civil Service Pay Band 1 | * |
Senior Civil Service Pay Band 2 | * |
Grand Total | 29.9 |
*data exempted under Section 40(2)
Some personal information has been withheld under section 40(2) (personal information) of the Act. Section 40(2) is an ‘absolute’ exemption and the department is not obliged to consider whether the public interest favours disclosing the information. Section 40(2) exempts personal information from disclosure if that information relates to someone other than the applicant, and if disclosure of the information would, amongst other things, contravene one of the data protection principles in Article 5 of the UK GDPR. In this case, I believe disclosure would contravene the first data protection principle, which provides that personal data must be processed fairly and lawfully. This information has been withheld as there were a small number of staff who met the criteria of your request . The department does not release information that affects a low number of staff as this would make them easily identifiable to the wider public.
Asked by: David Chadwick (Liberal Democrat - Brecon, Radnor and Cwm Tawe)
Question to the Department for Energy Security & Net Zero:
To ask the Secretary of State for Energy Security and Net Zero, if he will make a comparative assessment of industrial electricity prices in (a) the UK, (b) France and (c) Germany.
Answered by Chris McDonald - Parliamentary Under Secretary of State (Department for Energy Security and Net Zero)
The wholesale price of electricity in power markets is set by the last (i.e. most expensive) technology needed to meet overall demand – known as the marginal plant. In the UK, the marginal plant is currently gas power stations. Gas is an internationally traded commodity, and the UK is a large importer of gas, so electricity prices in Britain are much more exposed to changes in the international gas market.
This exposure strengthens the Government’s belief that the only way to guarantee our energy security and protect billpayers permanently is to speed up the transition away from fossil fuels and towards homegrown clean energy.
From 19 December 2024 Small and Medium Enterprises (SMEs) with fewer than 50 employees can now access free support to resolve issues with their energy supplier through the Energy Ombudsman. This means that 99% of British businesses can now access this service with outcomes ranging up to £20,000 in financial awards. We also understand that some UK industries are struggling with the cost of energy. As such, as part of our Clean Energy Industries Plan, we have announced that from 2027 a new Industrial Strategy Energy Support Scheme will reduce electricity costs by £35-40/MWh up to 2030. Over 8,000 businesses will see their electricity costs drop by around 20-25% under a new exemption scheme, bringing their costs more closely in line with European competitors.
Asked by: Lord Taylor of Warwick (Non-affiliated - Life peer)
Question to the HM Treasury:
To ask His Majesty's Government what steps they are taking to enable the adoption of tokenised funds using public blockchains while safeguarding against financial crime and systemic risk.
Answered by Lord Livermore - Financial Secretary (HM Treasury)
The Financial Services Growth and Competitiveness Strategy set out a comprehensive ten-year plan to deliver growth and attract investment. Championing innovation is a key priority within this strategy, and the Government is working closely with industry stakeholders and regulators to remove barriers and unlock opportunities presented by new technologies.
Using distributed ledger technology to tokenise funds could support financial market efficiency by enabling more efficient, real-time data sharing which could lower operational costs and enhance resilience.
The Government has published its Wholesale Financial Markets Digital Strategy, which sets out the key steps the UK has to take to digitalise its financial markets, including through the tokenisation of assets. The Government is taking forward various measures in this space, in particular the Digital Securities Sandbox. The DSS provides a bespoke regulatory framework that enables firms to test, scale and roll out the tokenisation of securities. The Financial Conduct Authority (FCA) also recently launched a consultation for a new Direct2Fund model, allowing investors to engage directly with investment funds through blockchain technology.
To manage financial crime risks, fund managers and UK cryptoasset firms continue to be subject to the Money Laundering and Terrorist Financing Regulations, requiring strict supervision, customer checks and suspicious activity reporting.